My brother and I started noticing ‘changes’ in our mother several years ago. Back then they were more subtle…repeating parts of conversations, having to think about names of people she didn’t encounter regularly, and other small ‘gaps’ in her cognitive process.
Mom is a very stubborn person – or as she puts it ‘independent’. She speaks of this trait as something she has had to be over time, raising three children without much help….but we all have been adults now for a long, long time. It goes deeper than that with her, which is something I’ve come to understand to a greater degree the older I get and the better acquainted with myself I become.
In the past nine months I have had much more direct insight into and involvement with my mother’s care, as has my brother for the past few months while she’s been staying with him in Florida – a trip that was initially supposed to be one month but has been extended now to just under three and with no real ‘end date’ in sight.
During this time, as it’s become necessary to ‘take over’ many portions of mom’s day to day care I’ve learned a great deal. I hope that my own experiences, if I pass on some unsolicited advice, will assist others in their own similar efforts with aging parents, and perhaps give some aging parents a little insight as to what those who try to assist you will face.
So, for what it’s worth, here’s a few tips I’d like to pass along. I am certainly no expert on any of this, and in the past nine months have made several mis-steps along the way. But I hope my experience helps others.
1. Power Of Attorney – this is a very, very valuable thing to have for those trying to assist aging parents. But don’t assume it’s the end all and be all of necessary documentation in and of itself. Even if you have power of attorney, have it notarized. Some transactions, irrespective of the P.O.A. are not completely ‘valid’ unless notarized. I recently sold my mother’s house in Maine, and found that even with power of attorney, because it was not notarized, the deed had to be signed and witnessed and notarized by my mother for my P.O.A. to be valid to sign the rest of the documents for the sale.
2. Medical Proxy – Again, a very useful document. However, should you reach a stage where your parent/loved one cannot make sound medical decisions for themselves, or should you need to have access to a full medical history to properly care for them and understand the foundation of certain challenges they may face, the medical proxy does not guarantee you will have it. Have your loved one sign a medical release with their primary care physician. This is not something you can retroactively have them sign if you have reached a stage where they cannot make sound decisions for themselves any longer whereas it could be challenged that they did not make a sound decision in signing it. As the world becomes more and more litigious in nature, and malpractice suits are filed at the drop of a hat, doctors are, understandably, exercising more and more caution in their efforts.
3. Utilities, insurance policies, and other accounts – It seems one of the easiest decisions to make to say to an aging parent or loved one ‘Let me take that over and handle it’ when you see your loved one, more and more, struggling to make sense of insurance coverages, utility bills, and the like. Don’t assume your power of attorney will grant you access to all the closed doors placed in front of you. Make a list of all the coverages your parent/loved one has, as well as all the utilities they have, and contact each and every one of them and have your parent/loved one authorize you to speak/act on their behalf. You will save yourself a lot of time and frustration this way instead of hearing repeatedly that they cannot assist you whereas you are not an authorized party on the account, and your power of attorney does not grant you this access.
4. Guardianship – One of the toughest decisions for a person to make is to appoint someone to act in their best interests if they are unable to do so themselves. It involves a level of trust with and knowledge of someone that can take a very long time to build. If you, like my mother, reach a stage/condition in life where you do not recognize the progression of dementia, alzheimer disease, or similar debilitating conditions and diseases, you also likely will not recognize the need for someone to step in on your behalf and provide for your well-being and your safety if you are not 100% able to do so for yourself. This can either be a relatively ‘routine’ process, or it can be a very long, difficult road to travel. My brother had guardianship of our father. He/we had to go to court to obtain it following Dad’s stroke and, in essence, prove him unable to care for himself any longer. We both knew it was necessary – Dad did not feel the same. Independence is one of the final remaining things that aging parents feel they still have when they find more and more being taken away from them and they will hold on to it as tightly as they can for as long as they can. Certain wording in a medical proxy or advanced healthcare directive can eliminate the need for a court hearing to determine fitness (unless a parent/loved one challenges it strongly enough), whereas a person’s primary care physician can make the determination that a person is unable to care for themselves and make sound decisions and a guardianship can be enacted upon that determination. It’s not a simple ‘sign and done’ deal, because a physician, if they have any integrity, will cautiously approach this decision with an informed view of a person’s overall condition – but in comparison with the idea of taking your parent to court and what that can feel like or what conflicts can arise from it – it’s the lesser of two evils. Certainly a guardianship can be challenged even if granted this way, but it also can take the ‘personalization’ out of it between a caregiver/loved one if it’s a doctor’s determination that it is necessary.
5. Support – I cannot express how valuable certain friends have become to me in the past several months. They are there with advice, understanding, compassion, or just ears to bend when I’ve needed them to be. I am beyond grateful to have this support in my life. I am not a person to reach out for help easily – I take on a lot, and then try to handle the ramifications of it all myself as well. BIG mistake….at least for me. While the day to day challenges of trying to assist an aging parent/loved one can be daunting enough, at any level of caregiving from occasional help to full-on 24 hour care, don’t forget that this is also your parent (in many cases) and thoughts and feelings and ‘old wounds’ can open up at any moment and come crashing in on you. Set your resources up before you need them. Make it so you don’t have to think about who to call and where to go for support. And to go a step further – if you know someone helping an aging parent/loved one – and they are anything like me (introvert, guarded, doesn’t reach out easily) – rather than ask them if they are okay and accept the answer of ‘yes I’m fine’…..or ask them ‘is there anything I can do’ and accept the answer of ‘nope, nothing I can think of’ – listen to what they are telling you are the biggest challenges they are facing with the caregiving, and suggest taking something off their plate now and again if you are able. Ask them more direct questions than ‘how are you’ – they might open up a bit more when prompted. I am a firm believer in taking responsibility for yourself and speaking your needs, but when it feels like the weight of the world is on your shoulders, even the most ‘responsible’ people can forget how to for a while.
6. Be Kind To Yourself – Remind yourself you are doing the best you can. Remind yourself of this often. Every day. And try to remember that you are not a machine, and sometimes, no matter how good your intentions are, you are going to make choices you will later wish you’d made differently. It happens…to everyone.